I have never seen someone who looked like me on a mainstream television show. I have never seen someone who looked like me, playing anything but a villain in movies, or in an ad or on a billboard. I am invisible. That is, until I walk down the street. That is, until strangers stare just a little too long and rudely whisper, “look at her eyes.”
As a child, I was often asked why my eyes were shaped the way they were, so crooked and far apart.
“I don’t know,” I would shrug. “I just came that way!” Sometimes this question bothered me, because I didn’t understand why everyone felt the need to ask it. Most of the time, I just didn’t know how to respond.
I was born with a craniofacial disease — Crouzon syndrome, a condition where the bones in the head do not grow. A condition that required too many surgeries and procedures to count, so I grew accustomed to being cut open, pulled apart, and put back together. Though I quickly learned that once something is taken apart, it’s never quite the same.
The first time someone told me I was ugly, I was in the seventh grade. I didn’t even realize I was “different” until I reached middle school. I always just assumed I was normal — I felt normal, but I quickly learned I did not look it.
“Does it hurt to be disfigured?” Bullies would sometimes ask me.
“Does it hurt to be an idiot?” I would sometimes respond.
If you Google the word “disfigured,” you get a definition “spoil the attractiveness of,” derived from the Latin word “fingere,” meaning “to shape.” Many consider the word to be offensive; others do not. I was born with a facial disfigurement, and not only do I not find the term offensive, but I also do not believe myself to be unattractive.
I did a lot of growing up during my time at the local children’s hospital, where the bones of my head and face were routinely broken and restructured, rectifying the premature fusion of my skull. After surgeries, during my extended stays in the intensive care unit, I would tell myself that pain was not real. That it was imaginary and only in my mind. If I concentrated hard enough on the throbbing pain throughout my body, I could convince myself, if only for a moment, that I was numb. I would lie there, unable to sit up, my eyes swollen shut. Nurses and visitors bestowed words of comfort upon me, trying to ease my terror, but over time, I grew used to it. What was once horrific became normal.
Even with the physically traumatic surgeries I was required to undergo, the physical aspect of my condition was nothing compared with the emotional toll of living with an appearance-altering condition. The everyday stares, comments, and subhuman treatment acted as a constant reminder of my painful medical history and my perceived shortcomings.
I lived much of my early life in survival mode. The priority was to keep me alive.
Because salvaging my physical health was so crucial, the emotional aspect of living with a facial disfigurement was overlooked by health professionals. While my mother and father did their best to offer support, there was only so much they could do. I tried therapy, but therapists always seemed to ask the wrong questions and never seemed to understand what it was like to have my physical appearance change drastically time and time again. “It’s like in ‘Freaky Friday,’ ” I would tell them. “Except I never get my body back. I never get my face back.” Despite their best efforts, they simply could not relate.
To make matters more challenging, I never had anyone who had been through the same experiences to turn to for advice and support. I would search the internet for others like me, trying to find personal stories and tips and advice for how to get through it, but was never able to find anything. I felt alone. To get through it, I told myself I would grow up to be the stereotypical definition of beautiful. With each surgery I had, I assured myself I was getting one step closer to being able to walk down the street in peace. People would no longer stare at me in confusion and disgust, wondering why I looked the way I did. Instead, they would admire my beauty. I would finally be happy. Nobody told me happiness was an inside job.
The Americans with Disabilities Act classifies facial disfigurement as a form of disability, recognizing the fact that individuals with facial disfigurements encounter discrimination and prejudice because of their appearance. I face discrimination and prejudice when I apply for jobs, when I’m on a date, when I walk down the street. The judgment is everywhere. Still, I refuse to live my life in seclusion, because other individuals are uncomfortable with my existence.
People with Crouzon syndrome and other conditions that result in facial disfigurements are not represented in mainstream media. How can individuals with disfigurements and physical differences be expected to accept ourselves and love our differences, when we aren’t even worthy of mainstream inclusion? Not only that, but there are people who would be angered if such inclusion were to exist. How are individuals with facial disfigurements supposed to be seen as equal when we still face discrimination in every area of our lives every single day?
There is no standard when it comes to the language and the representation surrounding facial disfigurements. I often use the word “disfigurement” in my work, because I find it packs more of a punch. It feels more powerful. Harsh, even. Terms like “facial difference” and “facial diversity” never feel adequate in describing my experiences.
While, it may imply that there is an existing standard in terms of physical appearance that individuals with conditions like Crouzon syndrome do not measure up to, I choose the word “disfigurement” because of the power it holds. I’m viewed as having a disfigurement, not just a difference. I believe the intensity of the term “disfigurement” allows individuals to become more aware of their own prejudice and more mindful of how they treat others.
Through this and other methods, I am working toward creating a world where those who are not disfigured recognize those who are as equals, where a person with Crouzon syndrome is given a role in a popular television show or is hired to appear in an ad or fashion campaign. In that world, I’d be able to go about my business or show up to a job interview without having my entire being called into question by strangers, and others with facial disfigurements would be truly viewed as a valuable addition to society. Because we are.
ORIGINALLY PUBLISHED IN THE NEW YORK TIMES